My father has Lewy Body dementia, and I am afraid to leave my mother alone with him.

Started by

My father has Lewy Body dementia and I am afraid to leave my mother alone with him because I feel her behavior towards him is abusive...

When my dad was at a phase where I noticed that his short term memory seemed to be worsening and he began having minor (compared to now) motor problems I decided to move back home to help out. My dad was always the one who took care of EVERYTHING. He did the bills, ran the errands, did the taxes, etc. I guess I wanted to be around so that I could pick up where he was lacking so maybe he wouldn't notice or get as upset or frustrated with the things that he wasn't able to do as well.
3 years later and I am still living with my parents - my twin sister has moved in a few months ago to help, too - but the situation is very different now. My dad needs assistance getting dressed, getting into bed at night, and eating. He has severe motor skill problems, hallucinations and also has trouble speaking. His brain gets mixed up in many ways, but in many other ways he is completely aware.
Being a caretaker is emotional and difficult for all of us who take on this responsibility. The biggest hurdle for my sister and I, however, is dealing with our mother. Rather than attempt empathy or understanding or patience she exhibits behavior that comes across as vary narcissistic, self-centered and downright abusive. My sister and I are usually the ones to get my dad dressed, make his meals, give him his medication but there are times when due to work or obligations we simply cannot be there. This scares me-especially since my mother has done very little to figure out a way to get the professional assistance that I think my dad needs - and will DEFINITELY need very soon. I have tried to gather his insurance information on my own but it is as if she is intentionally denying me access to take care of it for her. I have caught her screaming at him, yelling at him, cursing and belittling him - there have been a handful of occasions, for example, when I have woken up very early in the morning to the sound of her screaming at him saying things like "Can't you do ANYTHING?!" This tears me apart. My instinct, of course, is to jump in and ask her why she has to be such a jerk and then get her to leave the room and finish assisting my father with whatever it is he needs - at that point he is usually pretty shaken up and it is often hard to get him 'back on task' again. Which hurts all the more.
Furthermore, when anyone tries to approach her about her attitude or behavior she becomes incredibly defensive or takes a "pity me" approach as if WE are the awful ones. She even went to far as to call the police the other night on me for elder abuse against HER simply because I stepped in when she tried to start an argument with my sister and then bring my father into it who was then very confused and anxious and upset - so much so afterward that he couldn't eat. When the doorbell rang I knew she was up to something because it was 8:30 at night and I told her she could answer the door. Of course she told them it was a mistake. I also saw on the phone that she had dialed a number for the University where I work for some unknown reason. My co-workers know me well and I am not afraid of them thinking anything bad of me but it is still VERY embarrassing. On top of everything else it seems that in her eyes my sister and I are useless - we never do enough. Regardless of the fact that we make her dinner, buy her groceries, run all of her errands, clean the house, take care of her pet, etc. Her response is that this is "her house" and things should be done "her way." My sister's girlfriend of 4 years who I considered a sister-in-law left her because she could no longer deal with the stress of my family - in her words, "your mother is too much to handle." Other family members have also noted (though, discretely) on my mother's behavior, particularly since she has been recovering from an 'injured foot' for the past two months now so she hasn't been working and just lies on the couch all day.
I recently got my sister a job at the University where I work - she used to work from home, but this was a good opportunity and better pay. We are now both working 8-5 jobs and my sister is no longer at home during the day to take care of my dad AND my mom which has only made my mother more temperamental and I find myself worrying about my dad's well-being all day.
I know this is quite a rant - I have been holding all of this in for a while. I read some of the posts on this site concerning people with elderly parents who exhibited similar behavior to my mother's - many of them were the same age as my mother. My sister and I are 27 years old. I don't have a social life - work is a vacation for me, honestly. I know my father won't be here much longer I want to make the best of the time I have with him. I don't want to harbor ill will for my mother the rest of my life, either. I also would like to live MY OWN life at some point. I daydream about being alone with only myself to look after/moving far away/traveling - and I feel very guilty about it. Any advice? Please?


I'm so sorry that you're in this very difficult situation. I don't think that your mother's behavior is going to improve. In addition to the issues arising from your mom's mental/emotional difficulties, she probably is terrified, at some level, to see your dad's decline (even if she is narcissisic/borderline), and she's trying to "scream him into recovery." Two possible alternatives: (1) arrange additional caregiving for your dad during the day; (2) try to find a different living situation for him. Unfortunately, neither will be easy to arrange under the circumstances. If you hire an in-home caregiver over your mom's objections, your mom is likely to do her best to get the caregiver in trouble with the agency. Adult day care might be a possibility, though, assuming that you can present the idea to your mom in a way that stresses the benefits for her (rather than for your father). An alternative living situation might be feasible if at some point your dad is admitted to the hospital for several days (I think that it has to be three days as an in-patient, but I'm not sure). Then he might be able to go to rehab and then to assisted living. In the meantime, it might be a good idea for you to call your father's doctor's office and tell them your concerns. They won't be able to discuss the issues with you unless you're on the HIPPA form, but at least you've told the office what's occurring. Re the phone. If your mom is playing games with the phone, it may not be long before she is hanging up on people who call your dad and preventing your dad from making calls. Could you get your dad an easy-to-use cell phone so that he can make calls when necessary? Once again, I'm so sorry that your family is in this situation.
This must be terrifying, especially for your dad. I'm so sorry. My father-in-law had LBD and imho the changes to personality are worse than with Alz. He will probably lose skills rapidly. I also discovered that in his case, there were some symptoms in common with Parkinsons, such as certain tics. If he worsens soon, you may have no choice but to find a home with a dementia unit. Kudos to you for taking care of him for so long, but you can't keep it up forever and it will only get more difficult. Please make sure your dad has a health care proxy and durable power of attorney. Could you make an appointment for him with his GP, then arrange to take him yourself? If the doctor sees how much he has declined, she or he may be more willing to discuss the future with you. Good luck, we're pulling for you.
It sounds like she has dementia too. Time for a nursing home for Dad. Before your mother gets you arrested on bogus charges, step back. Call APS in your county and ask them to do a welfare check. NEVER go to that house unless someone is with you, you need a witness to protect yourself. NEVER. Even consider asking the police to check on them instead.
Oh dear. Your mother is definitely ill. I don't believe that narcissism comes on late in life -- if that were the problem you would have seen it in your growing up years. But dementia starts in old age, and other forms of mental illness could be latent and covered up well until the trauma of having a sick husband.

I think you have two parents with severe mental health issues.

Just as you make allowances for your dad's behavior and try to protect him from himself, you may need to take an different attitude toward your mother, too. Her "pity me" episodes may actually be valid. Pity her ... she's losing her husband, unable to cope, and perhaps losing her own equilibrium as well. Poor dear.

BUT ... somehow you need to do what you moved back to do: help improve/maintain dad's quality of life. Perhaps that also has to be goal for your mother's care, too.

An adult day program for your dad while you are at work sounds very attractive. You could do it for Mom -- "we know how hard it is to be alone with Dad all day while we work ..." and it may be a very good step for dad's quality of life as well. No one would yell at him, everyone would be encouraging, he'd see other people with disabilities participating in activities.

I feel sympathy for your mother. I really do. And I can easily believe that she can't fully control her behavior (any more than you dad can). But that does not make it OK for her to be allowed to abuse your father. What she is doing is absolutely and unquestionably abuse. If a staff person treated a dementia patient like that in a care center they would be fired and perhaps prosecuted. They certainly won't work with dementia patients again!

I am so very sorry that you and your sister are in this extremely difficult situation. My suggestion is to separate your mother and father, at least while you are working. Dad may be much better of in a care center.

Give your mom attention and sympathy. From the little you've revealed about her I can't believe she is mentally well. But absolutely find a way to protect your father from her abuse.

Do keep in touch her. We are all on your side!
BTW, the care burden for LBD is considered high. (I don't know how they measure such things, but they do.) All caregiving has its burdens. The factors that make LBD especially difficult (and more so for spouses than for children, interestingly) is that it combines dementia with physical impairments, and often the behavioral aspects come very early in the disease -- hallucinations may be one of the first symptoms, whereas in other dementia types this may happen much later on or not at all. Paranoia, delusions, belligerence -- many kinds of dementia include these, but in LBD the caregiver may be dumped into this difficult situation from the very beginning of the disease.

Poor Mom. She has been given a very difficult role she is not prepared for and, by virtue of her own mental health, not really qualified for. I hope you can come up with solutions that are good for both of them. They both deserve the best quality of life they can have under the circumstances.

Keep the conversation going (or start a new one)

Please enter your Comment

Ask a Question

Reach thousands of elder care experts and family caregivers
Get answers in 10 minutes or less
Receive personalized caregiving advice and support